Am I Out of Your Mind?

We were at Mass a couple of weeks ago when my six-year-old had one of his more dramatic melt downs. In a previous post, I dissected a melt down that my oldest daughter had at a local sub shop. There, I talked about how sensitive ASD folks can be to ordinary visual and auditory “noise.” It can cause such an assault on their senses that they lose control.

Well, church is another place where this can happen. You are surrounded by a ton of people intoning unfamiliar words. Choirs, often mediocre in quality, sing with great gusto in the belief that high volume equals deep sincerity. Women are more intensely perfumed than when they go to the grocery store . You also have statues, stained glass windows, and spot lights to contend with—not to mention the occasional use of incense. When you look at it from an ASD point of view, church can be a disaster waiting to happen.

From Pillar to Post.

I’ve been working with my boy the past few months, taking him to the more subdued Saturday vigil Mass—and only with his next-older brother, who has recently mastered the art of respectful silence. He was doing so well that I thought it was time for the whole family to try to go to the better attended, more formal Sunday morning Mass. Katie took three kids to one side of the church, and I took the other three to the opposite side. (Baby steps. We’re not ready to be all together yet.)

It wasn’t long before I discovered that we’ve still got some work to do. The kid could barely keep himself together. He kept trying to play raucously with his younger brother, and whenever I separated them, he would break into prolonged sobs and full-voiced promises to do better. After a bit of this, and seeing that I would not grant him access to his brother, he began climbing over me to get to the little guy—which prompted more hushed remonstrations by me, which prompted louder protestations from him. And on it went through the readings and homily.

By the time we got to the Creed, my half of the family was heading for the nearest exit—with the boy bewailing his fate the whole way. His older brother found the other half, and I sat outside the church with the other two, listening to the rest of the liturgy through the outdoor speakers. At least I knew when it was time to go back in for communion.

Mind Blindness.

Now much of this could be attributed to normal six-year-old rambunctiousness. But the most telling ASD sign was his lack of regard for the people around him. He had no concept that his antics or his complaints were disturbing anyone. He was unaware of the nonverbal cues given by the folks in the pew in front of us—cues that included one gentleman turning around and looking right at him with a bemused scowl on his face. Even when I pointed out to my boy that he was keeping other people from praying, it didn’t register. It was only when we got home, away from all the noise and distractions, that I was able to help him see where he had gone off the rails. And I know that this won’t be the only time he loses it. We’ve got a way to go—slow and steady—until he learns how to read a situation and act appropriately in it.

So how is this related to ASD? Because folks on the spectrum tend to have a deficit in what is known as “theory of mind.” It’s also called “mind blindness.” That’s psych-speak for the ability to recognize other people’s perspectives, beliefs, needs, and desires. People with ASD need extra help in understanding that other individuals have their own personality, think their own thoughts, and have their own preferences. What’s more, they don’t get that they themselves have a limited, subjective perspective. To a greater or lesser degree, the sum total of reality is limited to what they perceive or what they are aware of. This is especially the case when they are under stress or in a new, frightening environment. As their neurotypical peers would do in similar situations, they collapse in on themselves—only more dramatically. That’s where the term autism comes from: auto is the Greek root for “self.”

This mind blindness regularly gets a good portrayal in the television show Parenthood. One of the characters is a boy named Max, who has Asperger syndrome. In this clip, Max has a hard time navigating an ordinary history lesson. He doesn’t get that he has to show some deference to the girl in the desk next to him, and he isn’t clear on the respect due to his teacher. But as the clip shows, Max is not really being disrespectful. He’s being “a-respectful.” And that can be very maddening for the uninitiated.

The “Data Myth.”

Now all this makes a lot of sense, and it’s very helpful as I work with my kids. Very often, they’re not being bad, they’re just being aspie. And that gives me something to work with.

But a word of caution is needed here as well.

There are those who would equate mind blindness with a lack of empathy. Because ASD folks have a hard time reading other people’s faces, vocal tones, or body language, they must be incapable of making contact with them or having meaningful relationships. They’re like the android Data on Star Trek: The Next Generation. But mind blindness is not the same thing as lack of empathy. In fact, folks on the spectrum can be very loving and kind. They just don’t know how to show it. Or they show it in inappropriate ways. And that can lead to a kind of isolation in which the ASD person has few friends, if any. He wants to reach out, but he doesn’t know how. And he can have a hard time seeing when someone else is making a friendly overture to him, or he misinterprets it as something else. Then the social faux-pas happens, and he ends up alone again.

We’ve been through this with our older kids, and it can be heartbreaking. We try to help them understand what a potential friend was trying to say or do—but it’s usually wisdom given after the fact. And then it doesn’t help all that much, because ASD folks also have a hard time generalizing from a specific situation to a number of similar ones. It’s a horrible Catch-22 for them, but that’s where they are.

So we keep working with them. We especially keep working to make sure they know that they are loved and welcomed and accepted as the wonderful people they are. In this way, we are blessed to have a large family. Our kids have no choice but to figure out how to relate to other people. It’s the only way we’ll get anything done as a family! They’re getting some vital socialization right under their own roof, and we know that’s going to help them once they enter the world and try to make a way for themselves. In the mean time, they’ve got us. And they’ve got each other. And that’s just fine for now.

If It Ain’t Broke. . .

Recently, a co-worker made a comment that continues to reverberate in my brain.

We were talking about a passage from the Acts of the Apostles that described some of the miraculous healings that St. Paul performed during his ministry. As you might expect, our conversation included on the age-old question of why we don’t see so many of these healings today. Mind you, we have seen real healings in our lifetimes, but they just don’t seem as prevalent as what is described in the Book of Acts. It was in this context that this fellow said: “Just think: if St. Paul were here today, so many people would be healed. Who knows? Maybe even your kids would be normal.”

I had an internal hiccup, but instead of addressing it I gently shifted the conversation.

Normal—It’s such a loaded word. It implies that my kids are abnormal, that they’re defective or not good enough. Now I doubt that’s what this fellow really thinks about my children. He has a history of choosing the wrong word at the wrong time. But still, the comment made me think.

Healing? No, Thanks.

First, there’s the question of healing. I said in an earlier post that I don’t pray for their healing half as much as I pray for their success in the world. Frankly, I don’t know what healing would mean for them. Autism, Aspergers, PDD-NOS—they’re all so pervasive in their effects on a person that it’s hard to disentangle the ASD from the person. Some would even say it’s impossible. It’s who they are, to the core of their personalities.

I have a very hard time imagining any of my kids without autism. I can’t fathom what they would look like. It’s not the same as if a deaf person were suddenly able to hear, or if someone were suddenly cured of cancer or diabetes. I suspect that if my kids were somehow “healed,” they would end up being different people.

Different, Not Less.

That’s the thing about ASD. It carries with it some heart-rending social challenges. It frequently causes cognitive and learning glitches as well. The brain of an ASD individual is wired differently, and that’s going to cause some deviations from a neurotypical brain. But along with the challenges and deviations come strengths and bonuses: Amazing attention to detail; very strong memory; hyper-focus; even the occasional savant expertise in an area. Not for nothing are figures like Thomas Jefferson, Wolfgang Mozart, and even Bill Gates identified as being on the autism spectrum. Heck, even Dan Aykroyd has said that he has Asperger syndrome!

Mind you, I wouldn’t complain if my six-year-old suddenly lost his tendency to melt down at the first sign of a change in plans. And it would give me great joy to see my eleven-year-old freed from her perseverations. But autism isn’t melt downs and perseveration. It isn’t anxiety and narrow focus of interest. Those are all symptoms of a broader condition: a brain that processes sensory input in atypical ways. The melt downs, anxieties, and perseverations are all the results of the core otherness of an ASD brain.

They are the results, too, of feeling the pressure to conform to other people’s expectations. It’s bad enough that so much in the world seems stacked against them. Just imagine how stressful it is to be made acutely aware of how different you are by people who misjudge you. Now add that to the already strong social anxiety that is typical for someone with ASD. And add all that to the virtual assault on the senses that many ASD folks feel when they are in an environment that they can’t control.

What Do I Want?

Asking for my kids to be “healed” of their autism would be like asking God to unmake their entire brain structure and forge a new personality. Is that really what I want for my children? Isn’t that a way of rejecting who they are and wishing they were someone else?

No, a far better approach would be to teach my kids how to make their way in a neurotypical world. I don’t want to change who they are. I want what every other parent wants: for my kids to learn how to deal with their challenges so that their natural strengths and gifts can shine.

Do you know what else I want? I want a world in which my kids, and everyone on the autism spectrum, are welcomed, respected, and appreciated for who they are and for the gifts that they bring. I want a world that understands these folks and treats them with the dignity they deserve. I want a world where they get a fair chance to show what they’re made of and to make a difference for other people.

They’re not broken. So don’t try to fix them.

When Jacob Met Tyler

This video is especially moving. And it doesn’t need a lot of words to explain it. All you need to know is that Jacob is eight years old, and that he is blind and has autism. If you want to read Tyler’s reaction to this encounter, you can see it here.

Pornography for Autism?

I don’t know what to think of this news item. It seems that Jenny McCarthy, she of the autism-can-be-cured camp, is going to pose nude for the July-August edition of Playboy magazine and donate the proceeds of her photo session to autism. Stuart Duncan, over at Autism from a Father’s Point of View, reports that the money will go to McCarthy’s charity, Generation Rescue—a cool $2 million.

Now, some may furrow a brow at the fact that the money is going directly into McCarthy’s own charity. But that doesn’t bother me too much. That is, assuming that the charity is overseen by an independent board of trustees. Which it seems to be. (Get this, though. One of the board members is Don Imus’ wife. What a hoot!)

Others may furrow a brow at the fact that the money is going toward an organization that promotes the long-debunked theory that vaccines, particularly the ones containing thimerisol, are the cause of autism. McCarthy has hitched her wagon to the star of one Dr. Jerry Kartzinel, whose biomedical theories have not gained much traction within the medical or scientific community. He’s no Andrew Wakefield—the father of the vaccine conspiracy theory—but he’s pretty close. But again, I don’t mind that too much either. Mind you, I am leery of those who claim they can cure autism, but hey, knock yourself out trying!

No, my brow is furrowed because of the way this money is being raised. As parents of kids on the autism spectrum, the last thing we want is for our kids to be treated as objects. It’s why we avoid saying that our children are “autistics,” much the way people who can’t walk hate being called “cripples.” Terms like that reduce them to and define them by their disabilities, when there’s so much more to them than that. But here is Ms. McCarthy reducing herself into an object, a thing to be looked at and masturbated to. (Let’s be honest here. Who buys Playboy just to read the articles?)

There’s something really odd here. In the name of upholding and enhancing the dignity of kids on the spectrum, McCarthy is degrading herself. In the name of one kind of healing, she is feeding other sicknesses. She may be raising awareness, but she is choosing a pretty prurient way to do it—in a sense, prostituting herself “for the cause.” And that’s unfortunate.

An Autistic Onion-ite in Afghanistan

Get a load of this video, from The Onion. I’ve never heard of Michael Falk before. I don’t even know if he is genuinely autistic or if he’s an actor. If the latter, then hes’s very good. He’s got all the ASD stuff down:

• No eye contact

• Quirky mannerisms

• Oddly inflected voice

• Literal interpretation of figurative language

• Irrational reliance on logic

Not only does the video show many aspects of the autism spectrum; it’s a hoot! Enjoy!